"A second chance at life led me to volleyball"

23rd April 2020

‘It will be a good laugh!’ Or so promised the email received in 2011 from the hospital’s sports team manager, ‘we need an extra player for our volleyball team.’

The beneficiary of a life-altering double lung transplant just months earlier, Richard Burbedge, eager to get back to living life after years of steadily declining health in his twenties, jumped at the opportunity.

Fast forward 9 years from that fateful email and Richard is now a stalwart of the volleyball refereeing community in England; a diligent, competent and prolific referee who, among many accolades, represented his country as an official at the 2019 NEVZA U17s Championships in Denmark.

“I would never have been involved in volleyball if not for my transplant,” said Richard, “there is a huge connection between the two – I got really lucky.

“My double lung transplant is a huge part of my life but not the first thing I want people to think when they see me. That’s why I’m happy to share my story now – I know my achievements and refereeing appointments have been because of my ability and not because of prejudice.”

Repeating cycles

Born with cystic fibrosis, a genetic condition that primarily affects the lungs, Richard said he was given a “bleak prognosis” and wasn’t expected to live past 18 years of age.

He said: “I had an amazing support network of family and friends but when I got to my mid-20s my health started to deteriorate. I went from working full time and living a relatively normal life to spending huge chunks of 3-5 weeks in hospital receiving treatment to pick myself back up and get out of hospital…only to end up back in the hospital in repeating cycles.

“Each hospital admission would get longer because my lungs were more damaged and the capacity more depleted.”

In 2009, with Richard aged just 29 and now spending over half his life in hospital, the prospect of a future looked uncertain. This culminated in the doctors breaking extremely difficult news. Richard was told there wasn’t much more they could do for him medically and was advised to consider a lung transplant.

Richard said: “With some transplants, like a kidney, you can have a live donor. But with lungs, you are reliant on someone coming to a premature ending in their own life and their family saying they would like to help others. You have to come to terms with the fact that you only get an opportunity to live as someone else’s is stopped too soon.

“I just wanted to live a normal life, as anyone would.”

After endless testing, Richard was deemed a suitable candidate for a double lung transplant and, from then on, had to wait and hope.

A coke can

By 2010, Richard’s lungs had declined to the capacity of a coke can, significantly lower than the adult male average of 6 liters. Permanently on an oxygen machine, everything was exhausting.

“If you take a drinking straw, hold your nose shut and try and breathe only through the straw, that gives a brief idea of the effects and sheer exhaustion.”

Placed on the critical transplant list, after 9 weeks of waiting in hospital, in June 2010 doctors made the tough decision to send Richard home, fearing that if they waited any longer it would be too late for him to ever go back.

Missed calls

Waiting at home with trepidation for a phone call that might never come from the hospital, Richard said: “A few days later I got a call - I couldn’t find my phone but could hear it ringing! Eventually, I found my phone but as it was withheld number, I couldn’t call back.

“Eventually they called back and on the third attempt got through. It was the transplant coordinator and they said they may have a donor and I was to come to the hospital immediately.

“My sister, who was 5-months pregnant at the time drove over to take me to hospital. She asked, ‘how do we get there?’ But I didn’t know as I’d only been there once before! We then didn’t know where the ward was, so at 3am my 5-month pregnant sister was wheeling me around the corridors trying to find out where we were supposed to go!

“It was extremely stressful at the time – I was petrified – but I can now look back and laugh!”

A second life

Following a 12-hour operation, plus an additional 6 hours for what Richard described as a ‘slight mishap’, the procedure was a success. But 5 days in intensive care and a further 2 and a half weeks in hospital followed.

Mindful of the huge amount of luck and generosity leading to this point, when he was sent home, Richard was ready to get back to living after years of declining ill health.

“My mindset is the result of being in the hardest of places against the biggest of challenges. I’m aware that transplants don’t last forever but I don’t want to leave anything unfinished – after all, what’s the worst that could happen?

“Don’t have any regrets. Don’t leave anything undone. Don’t leave it too late to do the things that make you happy.

“We think we’ve got forever but I am fortunate to know that life doesn’t last forever and now I have a second opportunity at life. I know the preciousness of life and want to make use of this huge opportunity.

“When you’ve heard doctors say you might not be alive in 1 or 2 weeks, you think I wish I’d done this or that. If you have a second opportunity, then you should it, do that, do those things because you don’t ever want to feel like you’ve left something unfinished.

“In anything, it doesn’t matter what age you start, with a lot of luck, as I have had, and a brilliant mindset, you can go far.”

A referee and player

‘It will be a good laugh!’ Or so promised the email received in 2011 from the hospital’s sports team manager, ‘we need an extra player for our volleyball team.’

An extraordinary mindset, gracious outlook and tenacious spirit led Richard to say ‘yes’ and so he competed as part of his hospital’s volleyball team at the 2011 British Transplant Games, held in Belfast.

“I played at the Games and really enjoyed it! I thought I might have found a sport I can enjoy as I’ve always preferred team to individual sports. I left the competition thinking I need to find a volleyball club.”

After joining his local club, Newbury, Richard was encouraged by coach Sue Sayers to attend a Grade 4 referee course to learn the rules and help him develop as a beginner. From that course in 2012, Richard helped out his club and was then asked to line judge at an NVL match for Reading Aces.

“I got an invite to the annual referee conference and thought I might as well go along and from there it’s a wonderful blur of appointments, guidance, mentors and learning along my referee journey and I’m incredibly proud of what I’ve achieved in these years – including being awarded Referee of the Year at the 2016 Annual Awards – all because of the selfless opportunities given to me by others. I never would have had this time and these chances if not for my transplant.”

Along the way Richard has also represented Great Britain as a player at the 2013 World Transplant Games in Durban, South Africa, where the team finished 4th, including memorably beating the USA in the quarter finals.

Today and tomorrow

Presently, Richard is in the midst of at least 12 weeks shielding at home with his wife, following advice from Public Health England for those who have the highest clinical risk from COVID-19.

“I’ve already been through a period of 3-4 months isolation following my transplant but that doesn’t make it easier doing it again. I’m focusing on what I would like to do on the other side.

“I’m always forever grateful for the chance at a second life given to me by a person and their family who made the choice for organ donation – many people don’t have that conversation. I respect whichever way people choose and I’d really encourage people to have that discussion with their loved ones, so their wishes are known.

“There are other people with transplants who play or are involved in volleyball and – transplant or not – you are never too old to get involved.”

"A second chance at life led me to volleyball"